Genetically Engineered Babies Should Be Off-Limits For 5 Years, The NIH Chief Said

The head of the US National Institutes of Health, Francis Collins, on Wednesday endorsed an international halt to the genetic engineering of babies for the next five years.

The NIH endorsement of a “designer baby” moratorium follows the November announcement by biophysicist He Jiankui, of China’s Southern University of Science and Technology, that he had genetically engineered two twin girls. The news sparked condemnation from scientists and promises from the Chinese government that the scientist would be “sternly dealt with.”

“An international moratorium should be put into effect immediately,” Collins said in a statement about a moratorium proposal published by an international group of scientists today in Nature. The risks to children from such experiments, and fear that possibly dangerous genes will be dealt to future generations this way, outweigh the benefits of removing disease-linked genes from babies, they argued.

Dr. He used a gene-edited method called CRISPR on the twins, as well as a reported second pregnancy, to disable an HIV-susceptibility gene. Some scientists, such as Eric Topol of the Scripps Research Translational Institute, have raised concerns about potential unintended effects of the gene edits on the twins, named LuLu and Nana.

The call for a moratorium on genetic modification of human sperm, eggs, or embryos was made by 18 scientists from seven countries led by MIT and Harvard Medical School professor Eric Lander. They are asking countries worldwide to voluntarily pledge not to approve such genetic editing unless questions about safety are answered.

Topol, who was not part of the group, endorses the effort. Reckless gene editing, he told BuzzFeed News, “has significant implications for the human species — and it’s hard to get more serious or far-reaching than that.”

Topol is worried, however, that China’s CRISPR twins may have already opened the door to more dangerous experiments.

“My concern is whether it will be effective, since we saw a rogue scientist move forward in spite of the 30 countries that already have legislation,” Topol said.

The scientists suggest that it would be impractical to seek a worldwide treaty to legally ban designer babies, noting failed efforts by the United Nations to outlaw human cloning a decade ago. They instead want a worldwide network of biomedical institutions to monitor gene editing and hammer out ethics rules for its use over the next half decade.

“A temporary moratorium, while not perfect, would make a positive impact and have almost non-existent risk of impeding actual needed research,” stem cell researcher Paul Knoepfler of the University of California, Davis, who was not part of the new statement but made a similar call in December, told BuzzFeed News by email. “There’s just no need to leave the door open to CRISPR babies and won’t be for years to come. Maybe never.”

However, Harvard Medical School dean George Daley, who has supported basic research on tweaking the genes of human sperm, raised questions about a moratorium.

“I agree with the goals of ensuring an international framework to continue the deliberations about scientific and ethical issues,” he said by email. But he asked, “How long should it last? Who gets to decide when to rescind the moratorium? Is such a call going to prompt restrictive attempts to legislate the science and prohibit any future clinical work?”

In the US, the $39 billion NIH, the leading US supporter of basic biomedical research, is legally prohibited from funding research on human embryos, and laws prohibit the FDA from approving gene editing in babies. China released draft guidelines last month that would require its Health Ministry to approve such applications of the technology.

NIH, however, does strongly support research into the gene editing of cells for treatments for diseases such as sickle cell anemia and muscular dystrophy, Collins said in a commentary published in today’s Nature with his science policy adviser Carrie Wolinetz. “This is a crucial moment in the history of science: a new technology offers the potential to rewrite the script of human life,” they wrote.

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